Multiple Sclerosis Has a Representation Problem: People Like Me
One of the first things I was told after being diagnosed with Multiple Sclerosis was to get in touch with my local Multiple Sclerosis Society. That was the first time I'd ever heard of such a thing.
I remember thinking it was a little strange: wait, there's a club for people like me? But also... kind of excited, thinking: wait, here is an actual club, for people like me. What I didn't know yet was that the those representing "people like me" would end up underrepresenting me too. The real me: a brown Latin American woman living with Multiple Sclerosis.
If you've been following along, you know by now that I have a talent for turning every situation into a lesson. Sharing my stories is how I make the invisible visible. So today I want to walk you through a couple of episodes that ended up sparking my advocacy.
The One With the MS World Map With the Blank Spots
Picture this: 28-year-old me, nervously logging into my very first meeting for newly diagnosed people living with Multiple Sclerosis. A classic support-group setup online, complete with a virtual circle of chairs, each participant introducing themselves and sharing their diagnosis one by one.
So far so good, I was getting what I was promised.
Once we'd all introduced ourselves, we were walked through some facts about Multiple Sclerosis: what is MS, where to get help, and what not to Google.
At some point, the meeting host pulled up a world map showing MS data across different regions: how many people were living with the condition, broken down by country. Europe had a big concentration of dots on the map, spreading into Asia and the US.
Naturally, my first instinct was to find my home country and see how many people in my region were living with MS too. To my surprise, Central America was completely blank.
According to that map, there were no cases of MS in Central America. Zero. My brain immediately went: wait, is that actually true? Am I the only person from Latin America, from Central America specifically, living with this?
All this time I had been feeling lonely with my diagnosis, and seeing this world map with a blank space right in the center of the world, the place I come from, made me feel a million times more invisible.
But just like every other experience, I turned this into a lesson and decided to do some research on my own. And as a good millennial, I started my search on Instagram: stumbling across podcasts, communities, and exciting personalities living with MS around the world.
Turns out, there are a bunch of people across the world living with Multiple Sclerosis. Not just in Europe. Also in America, the continent. (Yes, America is a continent.) And a whole world opened up for me: a world where people from Europe, Asia, and the Americas, across every religion, ethnicity, social background, and language, dedicate their lives to raising awareness around Multiple Sclerosis. Just like me. A young Latina living with Esclerosis Múltiple (in Europe).
That story stuck with me, and so did my eagerness to confront everyone who erases us from their mapa mundi.
I met the host of the meeting some time later, and this time, to his credit, he actually listened to my story carefully. But his first instinct was still to pull up that same map, proudly pointing out that they now had three patients listed in Central America. Three.
My goddess.
Representation in its truest form. I guess I have those blank spaces to thank for it.
The One When the Minority Representative Discriminates Against Other Minorities
A few years ago, I was invited to speak about my experience living with Multiple Sclerosis.
What I didn't expect was to leave that event completely triggered by something a healthcare professional said. A person I'd like to call: Little Miss Minority Representative.
Little Miss Minority Representative had been asked to speak about MS from her clinical perspective, and at one point, in front of an audience made up mostly of people not affected by the condition, she said: "MS mostly affects industrialized countries and is, frankly, a condition tied to a specific ethnic group. There's no data showing it affects other countries or ethnicities outside of the European Continent."
The second those words left her mouth, I felt my blood start rushing. Triggered on so many levels at once: my Latina self went into a face-slap, my Multiple Sclerosis shrunk to the point of invisibility, and my strong urge to advocate took over.
All I could think about was every single person her statement had just made invisible.
So when it was my turn to speak, I stood up as living proof that what she'd said simply wasn't true.
Here's the thing: Multiple Sclerosis is known for being an incredibly diverse and complex chronic condition, affecting roughly 3 million people worldwide. It cannot, and should not, be reduced to a "problem" of one ethnicity or one group of people.
And here's the part that really gets me: the absence of data on certain ethnic groups doesn't mean MS doesn't affect them. It just means the data hasn't been collected. Add to that the fact that diagnosing MS is already notoriously difficult, and that plenty of countries simply don't have the resources to do it properly, and suddenly that "no data" starts looking a lot less like "no cases."
On top of all this, MS is frequently misdiagnosed, or dismissed outright, especially early on. People living with MS already deal with a lot of stigma, and comments like hers only add fuel to that fire. Minorities in particular face extra barriers just to get proper healthcare support in the first place. And honestly, that's just scratching the surface.
I wish I could give you the full play-by-play. The short version, however, is this: Multiple Sclerosis is exactly as diverse as the people who live with it.
So say it with me: Multiple Sclerosis does not discriminate. Everyone can be affected by it.
And ignoring people because of their social background, ethnicity, skin color, or region only makes each one of these patients even more invisible.
Get it?
So there you have it: two stories that triggered my advocacy. These are the experiences that made me raise my voice, and while I keep urging everyone who feels left out to speak up, I'll say it again for the people in the back: we deserve representation.